**Calling All Moms who had IUGR babies**

Discussion in 'The First Year' started by TwinLove, Jan 12, 2009.

  1. TwinLove

    TwinLove Well-Known Member

    We are trying to put together a thread for the moms-to-be of twins to use as a source of information.

    We'd like the moms of Twinstuff that had IUGR babies to please share any information that you think would be useful. Also, if you know of any sites that were particularly helpful to you, please post those as well.

    Thank you very much! :give_rose:
  2. Specky

    Specky Well-Known Member

    I didn't realize that twins could develop IUGR later in pregnancy. My boys were in the 90% all of my pregnancy. At our 32wk pregnancy one was 45% and the other 75%. We thought it was just an off week, or u/s error. At 35wks I developed Pre-E and was induced. Their placenta's had fused, and the boys were 1lb 2oz different.

    We were lucky it didn't happen until later in pregnancy, but not sure if my development of Pre-e was my bodies way of showing that if I had gone longer, things would have gotten worse for my boys...

    Just thought it was weird...
  3. 3n1n2n2

    3n1n2n2 Well-Known Member

    Thomas was born at 4 lbs and Tess was over 7. They measured oz's and then lbs apart from about the middle of my pregnancy. Dr. kept them in as long as he could so that they could grow and develop the best that they could. When Tom was not getting any nutrition at all anymore, Dr. said "it was time to move". When they were born, Tom did not breathe for about two minutes. He was taken by ambulance to a level three NICU where he stayed and endured many many tests to find out what was wrong with him. Technically he was not premature, but he suffered from many of the issues premature babies suffer from. He was finally diagnosed with IUGR and Failure to Thrive. He is now 3 1/2. He is very happy and healthy, but he is developmentally delayed by, IMO, about a year. He is, at this time, in the process of being evaluated by Early Childhood specialists in the areas of social/emotional development, cognition and fine motor, as well as receptive language. We're hoping for the best!
  4. jenniferkkelly

    jenniferkkelly Well-Known Member

    DS was always slightly behind DD from the first ultrasound (just an ounce or two). Once we hit 32 wks, he was several ounces behind & then just kept getting farther behind (he was growing, but not as much as DD). I had NSTs 3 times a week & an ultrasound once a week so my OB & Peri could monitor the situation. At 35 1/2 wks, they decided that it was time to deliver---DD was born 5 lbs 6 oz and DS was 3 lbs 14 oz. Both spent time in the NICU for breathing, feeding, and regulating temp issues (DD stayed 9 days, DS 13 days). DS had really bad reflux early on, but once we got through that, he started gaining weight like crazy. And now at 8 months, he weighs 23 lbs & is bigger than his sister who is around 21 lbs! He's a happy little guy, sitting up by himself & babbling like crazy.
  5. fuchsiagroan

    fuchsiagroan Well-Known Member

    What a great idea, Liz!

    My twins both measured BIG for quite a while. Both were always above the 95th percentile. An ultrasound at 21 weeks showed them big and healthy as always. At 25 weeks, DS had fallen off the charts. The largest measurement, his head, was only 10th percentile, and other measurements (femur, etc) were 2nd percentile or less. His fluid levels were also very low.

    It was the worst scare we've ever had. We could have faced delivering the next day (or the unthinkable decision of whether to deliver and risk both or wait and lose one). My OB immediately sent me for betamethasone shots. There was some talk of bedrest, but the perinatologist said that it hasn't really been shown to help outcomes, and gave me the green light to continue limited, gentle swimming as long as I was mostly taking it easy the rest of the time.

    And we got lucky. We managed to eke out an amazing 9 more weeks. The doctors monitored DS very closely. We had two BPP/NSTs a week, one fluid check and doppler scan of blood flow through the umbilical cord per week, and growth checks every two weeks. His fluid levels came back up, blood flow through the umbilical cord was normal, and he managed to keep growing just barely enough.

    The doctors said that as time went on, we'd be more and more strict about what would have to go wrong for delivery. To even think of delivering before 28 weeks, things would have to be really, really bad. Before 30/32 weeks, just bad. Before 34 weeks, a bit iffy. And as my favorite perinatologist told me, "If he even sneezes funny after 34 weeks, they're out!"

    At 34 wks 2 days, all the scans were fine - except that his NST looked fishy. They sent us straight over to the hospital. That evening, we delivered two beautiful preemies. Both came out yelling at the top of their lungs. DD had stayed in the top percentiles - 6 lb 3 oz. (Yes, at 34 wks.) DS was skin and bones at 2 lb 11 oz. But he did very well. He never needed any help breathing. (The NICU nurses said that babies under high stress in utero often develop faster that way.) IUGR put him at high risk for NEC, but with careful monitoring of feeds & digestion (not to mention mama's good milk!) he did fine. He spent 2 weeks in the NICU, and 2 weeks in the SCN. No problems, he just had to get big enough to maintain his body temperature.

    Because of DS's LBW and prematurity, he was automatically enrolled in Early Intervention. EI visited every 4 weeks throughout the first year. DS has always been right on track developmentally, or advanced for his age (crawling at 5 mo). He's had some physical therapy for tight muscles, but they say that can happen to any preemie. He's still about an inch shorter than DD, but he'd already gotten heavier than she is by 9 months, and now he must have at least a couple pounds on her.

    When lab work came back on the placenta, we finally found out what had gone wrong: his placenta was abnormally small, and in over a third of it, the blood vessels were clotted off. I'm amazed that he did so well under those conditions. But he has been a fighter from day one - you've never met such a persistent little guy!
  6. meganguttman

    meganguttman Well-Known Member

    Great idea!

    At 19 weeks, I went in for my u/s to determine the sex of my baby...that's right I thought there was only one. My midwives had told me several times that there was "no way you're having multiples, you're too small". I was small, because Ryan (Baby B) was in the less than 3rd percentile, stuck to the uterine wall with no viable fluid pac and we were unable to find a bladder or determine the sex. The u/s tech works with Dr. Quintero (TTTS expert) and immediately called him. They determined that I had one placenta and was just short of qualifying for Twin to Twin Syndrome. They determined that without a doubt, Ryan was suffering from severe IUGR. I put myself on bedrest, drank milkshakes (boost made me want to vomit) and drank tons of water. A week later Ryan had some fluid and we could see his bladder (and his pee pee). The u/s tech and I screamed so loudly with joy that we got a stern talking to from the dr. next door. Over the next several weeks, we watched as Ryan's fluid grew and grew. We seemed to be out of the woods of TTTS. Around week 31 Ryan's fluid went over 9cm and Jakes went to 4. We wondered if they could be reversing the shared flow. I was given steroid shots at 32 weeks as they feared I would be having an emergency c section in the next few days. Ryan had plans of his own though. My water broke at 33 weeks 1 day and it was definitely Ryan's. There was triple the amount of water as Jakes (which broke as I was put into the hospital bed).

    After my csection (by choice) the placenta was examined. The report came back with stunning news. There were TWO placentas fused together. Jake's placenta was fine, but Ryan's was black and mostly dead. Both boys were really small. Ryan was 3lbs 3ozs and Jake was 3lbs 11ozs. Ryan was on CPAP (forced air) for a day and both boys suffered from jaundice for about 2 weeks. They were in the NICU for a month as grower/feeders and working on remembering to breathe while eating. Although the NICU was the hardest thing I had to endure, I felt much safer knowing they were being watched 24/7 instead of checking on them once a week via u/s. Whenever I go through something hard, I always have to find the silver lining. Knowing they were safe was mine. Both boys made it onto "normal" growth charts when they hit 6 months. Ryan has weighed about 2lbs more than Jake since they left the NICU. They've just barely qualified for Early Intervention twice and two weeks after the assessments they reach the milestone they "failed" during the test.
  7. kdanielleflowers

    kdanielleflowers Well-Known Member

    I've cut and pasted my story from a few different e-mails I sent out during/after pregnancy. This was part of my Thanksgiving letter to my family who live 4 hours away:

    At my 22 week appointment, they began to see a larger contrast in size between the two girls. At that point, they were 24% different as far as their growth. This can be common and both girls had good fluid with active bladders, so my doctors were able to rule out the number one culprit of size discordance, Twin to Twin Transfusion Syndrome (TTTS). TTTS is very scary as it can completely deprive one twin of any nutrients while giving all of them to the other twin, causing great trauma to both. Four weeks later, at my 26 week appointment, the size discordance had greatly increased. Aurora was measuring 1lb 4oz while Bettye Katheryne was 2lb 4oz. This came out to be a 45% difference on the growth chart. Fortunately, Bettye Katheryne was right on track and not way above the growth curve. This let us know that it was not TTTS, but rather something that was solely affecting Aurora. I was admitted to the hospital immediately and have not been home since.

    That first night, the doctors found it most important to monitor the girls' heart rates continuously to watch for any decelarations or irregular patterns. They also put me through a litney of tests to check for possible infection that might be affecting my placenta and, ultimately, Aurora. The next day, all tests came back normal showing no signs of present infection and Aurora's heart beat was strong and steady. The doctors still thought it best that I stay on hospital bed rest and have the girls monitored closely, so they moved me to the ante-pardum unit. We are monitored 3 times a day with what they call "non-stress tests" where they strap me up to a machine and monitor the girls' heart rates for 30 minutes 3 times a day. Additionally, we get a biophysical profile ultrasound every Monday, Wednesday and Friday. The things they look for in those ultrasounds are that both girls have plenty of fluid in their amniotic sacs, their heart beats are strong, they are practicing to breath, they are moving well and that they have good cord blood flow. We have had mostly good ultrasounds with a few exceptions, but nothing that has caused us to deliver so far. Our last growth scan was Monday the 17th and both girls had grown. Bettye Katheryne is 2lb 14oz while Aurora is 1lb 10oz. Aurora is now in the lowest percentile for growth, but she IS still growing. We will not have another growth scan until Monday, December 8th.

    What the doctors have determined is that Aurora's size is due to her cord blood flow. Basically, the cord from my placenta is what regulates her heartbeat while she is in the womb. My cord is not pumping blood to her correctly and they believe that stems from an infection that went undetected early on during my pregnancy. Currently, she is getting blood pumped through her body about half or 3/4 as much as she should be. This is an issue that will resolve itself after birth as she will then control her own heart beat and will not rely on me any longer. Our current situation is just to watch and wait. If we ever get to the point where her blood flow begins to reverse, then we will deliver. It's a balancing act of "when will it be better for her on the outside than the inside?" Once they are born, we expect Aurora to perform well as she will be less stressed operating on her own and she should thrive outside the womb. Bettye Katheryne, on the other hand, might struggle a bit more at first because she is currently getting fat and happy inside my belly.

    Then my birth annoucement e-mail to friends and family:

    Our baby girls are here!

    As a lot of you know, I've been on hospital bed rest since October 28th with inner-uteran growth restriction (IUGR) for little baby A. Our original c-section was scheduled for 12/21, but after struggling so hard for so many weeks, we decided to move it up to 12/17, just one day shy of 34 weeks. As irony would have it, baby B began to slow down on our tri-weekly ultrasounds and three-a-day Non Stress Tests over the week prior to birth. The doctors were not terribly concerned about it, knowing we were scheduled to deliver on Wednesday evening. I began to worry a little, but had nothing more to go on than mommy's intuition.

    Fast forward to Wednesday...I haven't eaten since Tuesday at midnight in anticipation of an early afternoon c-section on Wednesday. Unfortunately, there were a few emergencies that came in, so we got bumped and did not get into the OR until 5:00 (so momma was hungry, thirsty and NERVOUS by then!). My OR nurses and CNA were wonderful. Putting in the epi/spinal combo hurt like nothing I had ever felt before, but as soon as it was in, my body was numb and I forgot how bad it hurt going in. After I was laid out and prepped, Kenneth came in to sit by my head and the CNA stayed up there with us, peeking over the curtain and giving a play by play so I knew what sensations to expect. I heard them begin to cut and smelled it too (something I wish I had known before hand). I could feel it, but just as a "sensation" and not as pain. At 5:21 pm, Aurora Nicole came kicking out into the world with eyes wide open. She squeaked a little, but wasn't able to let out a big scream. She weighed 2lb 4oz. The baby station where they took her was right up by my head, so I could see her moving around and she looked perfect, just little. Her first APGAR was a 5, then she progressed to a 7. While I was watching her, I felt the delivery team begin to really push on my belly. Baby B, Bettye Katheryne, was very high in my uterus and did not want to come out. My OB got quite a work out pushing on me and they almost knocked over the screen between me and them. Things became urgent and they had to actually vacuum her out. I could not see her baby station and thought I heard a slight wimper when she came out at 5:23 pm. Little did I know, she was blue, non-responsive and had her cord wrapped around her body. She weighed 4lb 4oz and had an original APGAR score of 1, yes, that is a 1. Kenneth just kept telling me how beautiful she was, all the while watching the neonatologist working furiously to get our little girl moving. Within 20 seconds, she was intubated and sprung to life. She ended up with an APGAR score of 8 after a lot of work from the NICU team. I truly believe that she was declining in utero and our decision to deliver early due to her sister's IUGR ended up saving her life.

    After a quick time in recovery (still oblivious to the original state of Bettye Katheryne), I was wheeled back to my room and feeling pretty good. The epi/spinal stayed in all night and was taken out around 6:00 Thursday morning. I began to regain feeling in my feet and legs and got up to shower around 11:00 Thursday morning. Let me tell you right now, that first journey out of the bed is the hardest. I honestly didn't think I was going to make it. However, once I was up and about, it got easier and easier each time. Kenneth had been to the NICU to see the girls several times and brought back videos for me to see, but I did not get to go see them until 2:00 in the afternoon on Thursday and it was worth every painful step from my room to the NICU! Our girls are just the light of my life and such amazing little fighters.

    We are so blessed that these girls are as healthy as they are. They have fought every inch of the way to get here and we couldn't be more proud of them. I am feeling pretty good. Just a little bit of sore muscles. Kenneth is off for two weeks of Christmas break so we'll be seeing the girls a lot. I've tried to post links to our photobucket below. I hope it works. They're just so adorable and pictures do them no justice. OK, maybe I'm a bit biased.

    Bettye Katheryne came home on 1/5/09 and we are awaiting Aurora's homecoming in the next couple of weeks. They are both thriving and doing great!
  8. LillyWhite1

    LillyWhite1 Well-Known Member

    Great idea! I wish I had something like this when I was still pregnant.

    You can read my full story in my blog in my siggie. My boys were born at 28wks 6days due to IUGR in Baby B's (that's Evan) placenta/umbilical. Cameron (Baby A) was born weighing 2lbs 15oz and Evan was 1lb 7oz. We knew from the beginning there were issues because Evan's amniotic sac was half the size of his brothers and it stayed that disproportionate the entire pregnancy. Today they are 9.5 mos old actual and 7mos old adjusted. I must admit that they have significant developmental delays in their fine and gross motor skills and severe reflux/GERD causing them to currently have the FTT tag and today weigh under 13.5oz for Cam and 11.8oz for Evan, but are healthy in all other ways.


  9. artemis

    artemis Well-Known Member

    My baby A had IUGR, and I wish I'd had a resource like this thread! I was so worried, it would have been nice to know things will be fine. :) I can share my whole story, in case someone ends up in a similar position.

    The doctors noticed she had a small placenta, but no one told me it was going to be a problem. Aparently they don't know why it happens, but it's more common with multiples. At 30 weeks in my pregnancy I started to feel like something was wrong. I don't know if it was stress or what, but that same week I started having an irritable uterus/preterm labor symptoms and had to be admitted to the hospital for a day and a half of monitoring and meds and steroid shots. They put me on nifedipine and things slowed down, so I was sent home on bedrest.

    At 31 weeks I had a followup with the peri and he found that Baby A was starting to struggle a bit. The placenta just wasn't big enough to give her all the nutrients she needed. She was only measuring 28 weeks by that point, while my Baby B and his placenta were fine. I was on bedrest, although the peri said I could still walk around the house a bit and shower, etc. I spent all my time laying around the house eating as much protein as possible (about 100g/day), to try my best to fatten my babies up! I was being monitored twice a week with heartrate monitoring and biophysical ultrasounds with the peri.

    At 34 weeks my baby was going into distress. She was now measuring 30 weeks, and they'd had the steroid shots, so I went straight from my appt to L&D and a couple hours later had a cesearian birth. Both were healthy but had to go to the NICU. Baby B (4lbs) was on the CPAP for a few hours, but my IUGR baby (3lbs) was so strong she never needed oxygen! They stayed in the NICU and then step down nursery for 17 day (baby B) and 21 day (baby A), as just feeder growers. Never had any As or Bs.

    They were able to start practicing breastfeeding as soon as I was able to come see them, and we continued doing that once or twice a day until they were able to do a real feeding that way. I pumped for about 7 weeks full time and supplemented with formula, and after that they were finally strong enough to start getting some meals by nursing. We slowly increased the nursing and now they are both doing it full time, so it is definitely possible even after a difficult start.

    My Baby A is 4 months old now and is still facing more challenges than her brother. She is a couple of pounds and inches smaller, and she is not quite as strong physically. She interacts the same way as her brother, but she doesn't have the muscle control yet. The pediatrician explained that we just have to think of her as a much younger baby, because her development in the womb was so different than his. Really, in some ways it's like having a 34 weeker and a 30 weeker instead of two the same age. I don't think that's the situation for all IUGR babies, but it's good to know that it can happen. And my baby gets stronger literally every day, so she'll catch up in time.
  10. ambernruby

    ambernruby Well-Known Member

    After being successful at our first attempt of IVF i got pregnant with my girls! I ended up being on bedrest in hospital for the first 3months because i developed severe OHSS triggered by the fertility drugs i had used to concieve. So the babies were monitored very closely throughout the rest of my pregnancy and after the first 3months i returned to work, the babies were still being watched over every 2wks and were growing well and were always average for their gestation. At 31wks the U/S showed that Twin B's growth had slowed right down. There was no panic, they thought that maybe there had been an error in some of the measuring in the past but wanted me back in for monitoring wkly. At 32wks i ended up in hospital as i thought i was in labour, i was given some steroid shots to help mature babies lungs in case of preterm labour. The pains stopped and i was allowed home. When i returned to the hospital for U/S it showed that Twin B's growth was still alot farther behind than Twin A's but there were no signs of distress so they just wanted to keep a close eye on them both. They upped the monitoring to 3X a wk. I left work at 31wks so at least it gave me something to do. There was no real panic from the drs and nobody mentioned IUGR to me so i was really quite clueless at this point,ignorance was bliss. Christmas eve 2008 @ 35wks i waddled along for my monitoring at the hospital to find that Twin B had not grown at all but Twin A was doing well. Given that Twin A was doing so well they really wanted to keep her in as long as possible. Twin B was now breech they had both been head down up until now, so they booked me in for a section a wk later on New Years eve and agreed to let me go home so long as i could return to the hospital for daily monitoring. I told myself that i'd been given the shots so my baby would be fine and i was going to make it to 36wks, i was convinced that it was abit more fuss than necessary. So on New years eve i gave birth to my girls via section and were screaming, Twin A weighing 4lb17 and Twin B weighinj just 3lb 5, they were both tiny but perfectly formed! The drs didn't bargain on either being so small. Ruby a.k.a Twin B was shown to me and then whisked off to NICU as she was so small. They hooked her up for tests and she was just perfect, she needed a little help regulating her body temp and was tube fed until she got strong enough to suck. Amber a.k.a was allowed fine too she was put in the incubator aswell but was allowed onto my ward while i rceivered. The drugs make everything so hazy now but from what i can recollect Amber had cup feeds while we tried to get her to latch on for breastfeeding and during this time she lost 7ounces so was now just 4lb7 so we ended up in NICU after 3 days on recovery, i was lucky enough to get a room in NICU to be together as a family. After 3 days Ruby was also allowed into the nursery and they were both kept in just 15days as feeder/growers.
    While working with on trying to establish breastfeeding one of the nurses mentioned IUGR and i had no idea what she was talking about so i asked her and she explained to me that Ruby was being was struggling to get any nutrients from the placenta and that had the dr allowed me to go further on with the pregnancy she would of "perished" So i thanked my lucky stars for modern technology and the endless monitoring that was carried out while i was pregnant. Ruby latched on straight away and was starving hungry for a wk! After the first wk she was zapped of all energy and feeding her became a struggle so she was back on the tube feeds to give her a rest. Her weight gain was slow at first but she is now caught up weight wise. Ruby is such a big character and charms everybody she meets she lights up our lives, both my girls do! Ruby seems to be meeting certain milestones a few wks behind Amber but who know's if that is related to the IUGR? I do worry about what she eats and if she is developing ok but the drs tell me she should be caught up by the time she is two so i try my best to keep that in mind. I had never heard of IUGR until the nurse explained it to me after she was born, it's all new to us and we are just taking things as they come or at least trying to.
  11. biglittle8

    biglittle8 Active Member

    During my 20 week ultrasound it was discovered that Baby A wasn't growing properly and was diagnosed with IUGR. She was in the less than third percentile for size while Baby B was always above the 85th percentile. Very big for a twin! I was given weekly biophysical profile ultrasounds and growth was checked every other week. While Baby A remained in the less than third percentile, she continued to at least show some growth and the biophysicals were OK, which are the two factors which kept my pregnancy continuing. At 30 weeks I went into preterm labor and was given both courses of steroid shots to mature the babies' lungs. They were able to stop the labor and after four days in the hospital I went home on nifedipine. Then at my 32 week appointment, Baby A's biophyical profile wasn't great and neither was the NST. I was sent to the hospital and the next day, via emergency c-section, Alexis was born weighing 2 lbs. 10 oz. and Ben was 4 lbs. 15 oz. Ben spent 18 days in the NICU and Alexis came home after 25 days. Alexis was on CPAP for 7 hours after her birth, but that's all the respiratory help either needed. They were "feeders and growers" in the NICU and Alex came home weighing just 3 lbs. 3 oz. They are now five and a half months old and Alex is still only nine pounds, but has quite a nice little growth curve of her own. They are both perfectly healthy and developing normally.
  12. busymomof3

    busymomof3 Well-Known Member

    We knew right off the bat that one baby was smaller than the other and we had one ultrasound a month from 6 weeks on until 24 wks and then we had them twice a month. Baby A was always in the 11th percentil and Baby B was always in the 3rd percentil they grew consistently every time but remained in those percentiles the whole pregnancy. At 30wks they decided to give me the steriods just in case and when I went back the following week ultrasound they decided they didn't like the placental blood flow to baby B so I was scheduled for a section the next day and kept in the hospital overnight.
    My boys were born at 31wks 2 days weighing 3lbs 11oz and 2lbs 8oz and spent 67 and 74 days in NICU. My little guy actully did better than his big brother and they told me that that is often the case because they are used to fighting harder for the nutrients in utero. He did very well in NICU and it took him a little longer to come off of the respirator and CPAP than his brother but after that he did really well. His brother on the other hand was a terrible feeder and had tons of infections etc.
    They have always been at least 3 pounds apart and are now 20 pounds & 17 pounds and two weeks shy of their first birthday :)
    My smaller guy has been a little delayed in gross and fine motor skills but he really took off in the last few months and is now walking along furniture which is something we never thought would happen this early :)
    My bigger guy also has some delays so I think it is just from the prematurity and not necessarily the birth wts.
    If anyone has any questions or just wants to talk about IUGR I would be glad to chat anytime
  13. vharrison1969

    vharrison1969 Well-Known Member

    I landed in the hospital on total bedrest at week 24 due to a shortened cervix and preterm labor. At that time A & B were very close in weight. We did NSTs twice a day, and all looked well. At my "final" ultrasound the morning I was to be discharged (at 31 weeks), they noticed that B had not grown almost at all, and he had developed absent end-diastolic flow in his umbilical cord. Needless to say, that scuttled my discharge and resulted in NSTs 3 times per day plus ultrasounds 3 times a week to check to make sure the cord flow hadn't reversed.

    My peri didn't want to wait too long to deliver even if there weren't any more problems, so we made a plan to induce at 35 weeks. They did an amnio to make sure their lungs were mature, then started to induce the next day. About 4 hours into labor, they "lost" B (couldn't find a heartbeat) and an ultrasound revealed he had turned transverse. I didn't want to risk it, so we decided to do a C-section and delivered about an hour later.

    Both boys did pretty well at birth (both 7,8 APGAR scores at 1 and 5 minutes), but B was very small and had to go straight to NICU. A (Nate) was 4lbs 3oz and B (Jack) was 3lbs 2 oz. Jack was a feeder and grower for 18 days in NICU and released when he hit 3lbs 12oz.

    He was a much fussier baby, had some reflux issues, and at one point was 1.5 lbs smaller than Nate. He was also behind in a lot of milestones compared to Nate, especially in regards to neck strength, pushing up, rolling over, etc. It was like he was "preemier" than Nate.

    Then at about 6 months old he started to eat more, gain more, grow more, and get all overachiever. At 1 year he was an inch taller and over a pound heavier than Nate! They've evened out again, but for a while Jack was the "big brother" and is still way ahead in gross motor skills and muscle tone.

    So my advice is to have hope. These IUGR babies can catch up; sometimes with a vengeance! :)
  14. WaterGuzzler

    WaterGuzzler Well-Known Member

    I'm so excited to share my success story finally! I spent a good amount of time here while I was pregnant after finding a few stories on here about TTTS while googling. I hope that others will find this and give themselves the same hope that I tried to muster up.I found out at 9 weeks that I was pregnant with identical twins. They called me in for an ultrasound due to my "unusually high" hcg levels to rule out a molar pregnancy. Lo and behold, I was having twins. I am a nursing student and at that time I was doing my OB/pedoatrics rotation so I knew of the complications that could arise. My first concern was that I was having momo twins because they didn't see a dividing membrane. Everyone told me not to worry about that as it is so rare. I told them that even if that wasn't the case, there was still the risk of TTTS. They blew it off. I had heard about the window to best see a membrane so I called my OB's office to schedule another u/s. Evidently they were going to call me anyway to get me in sooner. YAY, we were on the same page!At just over 10 wks I went in and there was an obvious membrane separating them. When I look at the photo now I can see that there is a very slight difference in the size of the sacs but it wasn't concerning at the time. We scheduled another u/s for Christmas Eve when I was 15w5d. I was excited at the prospect of finding out the gender of the twins and being able to tell everyone that night at the family Christmas party. Little did we know that we would be sharing daunting news instead. Our u/s tech used to work for Dr. Quintero so was very familiar with TTTS. When she told us that it was brewing we were devastated. They were now referring me to a high risk practice with Dr. Q. I couldn't just sit and wait so I emailed him that night. He emailed me back (with a personal email!) Christmas morning and said he'd get in touch with me. We went in the following week thinking we may be having surgery the next day but because of the strict criteria that had to be met we didn't. Our donor's fluid was not low enough to qualify. We were literally within mms! We were referred to a perinatal cardiologist as well due to our recipient's heart being enlarged and not functioning optimally. We were monitored weekly by both Dr. Q and the cardiologist. Meanwhile we were watching Lia's heart progressively get worse and Eve's fluid decline. She was officially "stuck" 3 weeks later so we were scheduled for laser therapy. These were 3 of the most excruciating weeks we've ever endured.At 18wks3d we had the surgery. We were Stage III. We didn't know how the girls would fare until our u/s 24 hours later. It was amazing to see them in utero with the camera. We didn't see much of Eve because she was stuck facing my placenta, but still amazing nonetheless.After the surgery we were still monitored weekly by the cardiologist and Dr. Q. We watched Lia's (recipient) heart get worse for a little bit, and even Eve was not behaving properly. Their size discrepancy had always been about 25%, then it improved to 19%, and then it started to become wider again. Now Eve was suffering from IUGR which we found out was unrelated to the TTTS but related to her velamentous cord insertion instead. I was admitted to L&D for monitoring due to a change in Eve's dopplers. I spent 4 days there while having daily dopplers until they decided it was time to deliver them via c-section. Eve was showing signs of hypoxia (anemia, late decels) and was not growing appropriately.At 29w6d I delivered my girls. It was very sad for me. I did not want them out at all but I couldn't argue because they were obviously not doing well in utero anymore. I fought for as long as I could for them to keep them in but now it was out of my hands. I had to trust the doctors and God. Lia came out crying, weighing 3#2oz. Eve came out silent but I finally heard the weakest little sound that was supposedly her cry a few minutes (I'm sure it was less--it just seemed like forever!) later. She weighed 1#15oz. I didn't get to see them until later that night. And so the NICU journey begins...They were both on CPAP for 9 days, after Lia being ventilated only for the first day. At 9 days old Eve was diagnosed with malrotation of the bowel unrelated to TTTS. 2 days later Lia was diagnosed with the same thing. Both had surgery to correct it. The surgeon said there is only one other reported case of identical twins having a malrotation. Leave it to our girls They had typical feeding issues but spent most of their time only as growers/feeders. They were discharged at 51 and 54 days old when I would have been about 37 1/2 wks pregnant.Lia does have brain damage (specifically PVLM--periventricular leukomalacia, meaning death of the white matter) that resulted from the TTTS, as well as congenital heart disease. She has elevated BP because of her heart, but nothing that is too concerning. We will not know how the brain damage is affecting her until she grows but we are hopeful. She seems to be progressing nicely now at 4 months old. Eve was given a clean bill of health. She is still very small due to her SIUGR but has no issues related to it outside of her size. At her 3 month weight check she weighed 6#8oz. Neither had brain bleeds or any of the typical preemie problems other than reflux. We were very lucky and blessed. They are most certailny our miracle babies (and definitely our LAST babies!).I hope someone can find this who needs the encouragement. I know it helped me tremendously to read others' stories. I think the best advice would be to be an advocate for your babies. There were times when we struggled with some of the physicians at the high risk clinic. They didn't understand the magnitude of the situation, even though they worked with Dr. Q. Thankfully we had Dr. Quintero and his u/s techs on our side. And if it hadn't been for the weekly monitoring things likely would have ended up tragically due to how quickly things started progressing in our particular case.
  15. genagoodrow

    genagoodrow Well-Known Member

    Never formally diagnosed, but thought I'd share my story here too. Great idea to collect these for expectant MoMs!

    We were shocked to find out about twins at 19 weeks. At that point our awesome peri's office (and we only happened to be there since the doc was a friend of my OB, fortuitous!) saw that our girls were di-di. They assumed fraternal, and so weren't phased to see Baby B lagged behind in size and weight by a little. She did all along. Totally healthy and great pregnancy. If they had been fraternal I wouldn't have had a reason to worry.

    The girls were born at 39 weeks, and weighed almost 1 lb apart: 6.11 and 5.12. Later we had them tested and found out they are MZ.

    Izzy, our Baby B, has always been lighter than her sister. She eats totally differently and is now about 1.5 - 2 pounds lighter at 22 months old. They are almost the same height and have hit all their milestones together. But Izzy's body has always been tiny. She looks like a little elfin changeling. She's active, but I wish I didn't see so many ribs.

    I've never gotten a good explanation of what happened or why. One nurse I talked to afterwards suggested Selective IUGR. If it was two placentas, fused at birth, both looked good. It also might have been a less favorable cord placement. Whatever was different between these girls hasn't held Izzy back, but has totally altered her. She's a very different baby from her sister - independent, inquisitive, more focused and much less interested in food.

    My babies are a wonderful blessing, and are each amazing. But I wish I knew what happened to Baby B.

    BTW - Izzy's iron stores were less than her sister, something to watch out for in lower weight babes!
  16. brieh

    brieh Well-Known Member

    We found out baby B had IUGR at our 24 week ultrasound. It seemed to take them a long time to come tell us everything was ok and we could leave. Instead they came out with the dreaded letter and instructions to head upstairs to have a non-stress test done. I had no idea what that even was. So we headed upstairs and had our world slighly shattered. Given the worst case scenario and put on bedrest at home indefinately. They would be sending a nurse to the house to monitor me. It was all quite overwhelming.

    Then you start second guessing everything you did. But I felt fine, why was the baby not growing? Was I doing too much to cause this to happen? Why after all the fertility issues was this happening to us? So I rested and did everything they told me to do. I came home and googled everything under the sun, scared myself to death with things I found. Came onto Twinstuff and found so many great people similar stories willing to share their experiences.I went to all the extra ultrasounds and at each one we hoped for good growth to keep things going just a few days/weeks longer. Baby B started to do quite well at one u/s and they relaxed the homecare visits and I could go to the hopital once a week instead for the tests.

    Then at 33 weeks we had another one of those dreaded letters after and u/s appt and they sent us upstairs. This time it showed her head wasn't growing but her abdomen was and now they were quite concerned, also her cord flow was still showing the resistance they were watching. So now we had several issues and they checked us in for our c-section to be done in 48 hrs after my steroid shots. We actually got bumped another day and to be honest I was happy that it gave them one more day to grow in me. So at 33 weeks and one day they were delivered weighing 4lb 8oz and 3lb 10 oz. Both came out screaming and neither had any breathing issues. They were off their IV's in a couple days and soon in a crib together. We had no major setbacks, no jaundice. We consider ourselves very lucky that they were in the NICU for only 3 weeks.

    They are almost 3 months old and doing well. They still weigh approx a pound apart. Baby B (Quinn) is a little slower to do things that her sister does (Lexia), but not by much. She seems to need a bit more sleep and isn't cooing as much or smiling yet. These things concern me a little, but it apparently all normal. We are just enjoying every moment of them being here, healthy and happy!
  17. morgan57

    morgan57 Well-Known Member

    I was pregnant with mono/di twins. From the beginning, my baby B measured a few days smaller than my baby A. I was terrified of TTTS, so I constantly worried about the size difference. My OB wasn't worried about it since both babies had good blood flow and were growing consistently each ultrasound (every 2 weeks). At 22 weeks, baby A was in the 50th percentile (or above) and baby B was in the 18th percentile. My OB was concerned and I started modified bedrest and drinking 3 high protein ensures per day, trying to gain as much weight as possible.

    Baby B continued to grow during the pregnancy but fell in percentile each visit. Each time I went, the OB told me to prepare for a delivery the following visit. Shockingly, I made it to 34 weeks before baby B fell below the 10th percentile and the OB felt it was time to take the babies out (after 12.5 weeks of bedrest!). Baby A was born at 4lb8oz and baby B was 3lb5oz. Both babies were perfectly healthy- baby A spent 11 days in the NICU and baby B spent 17 days...both were just feeders and growers.

    They have done fantasticly well for being 6 weeks early...they are for the most part hitting milestones for their actual age (even ahead in some areas, they both rolled over at 4 weeks actual age!). At 4 months, baby A is 14-15 pounds and baby B is about 12lbs. We do have some issues with reflux, flat heads, but nothing at all serious.

    I had the worst pregnancy...throwing up every day, miserable with worry with these guys and now I stress myself out over every ounce they eat, how much tummy time they do...it really is nice to reflect back on the days that I worried if baby B would make it out alive or make it past 24 weeks and put things into perspective.

    I always looked for other posts from people who had gone through IUGR and I hope that my story will provide some hope to someone out there.
  18. AEmommy

    AEmommy New Member

    My husband and I got pregnant with twins after our 2nd IVF attempt. We found out we were having a boy and girl, and all U/S's were fine most showing them around the 50th and 30th percentiles. The only issue I had was a short cervix, so the doctor wanted me to take it easy. During our 36 week U/S, Baby girl's measurements had her getting smaller! My husband and I figured it was the inexperienced tech, but they also saw I was 5-6 cm dilated. I delivered the next day when I came back at 7 cm dilated, Baby A weighed 5lb 13 oz, Baby B was 3 lb 13 oz. The 2 lb difference was very unexpected since 2 weeks prior everything "looked ok" with her only a little behind her brother, but I suspect that the difference had been going on more than two weeks.

    I had never heard of IUGR before, until they had to take her up to the NICU and the nurses said that is what she had. She stayed in NICU until she could regulate her own body temperature (Baby A was able to come home). They put her on a feeding tube also, but fortunately she didn't have any breathing problems. Her stay was only about 9 days and she came home around the 4lb mark.

    I feel like I stress out about this more than my husband does- from the beginning the noticeable difference has left me worrying as to what it could mean for her health long term. I feel like I have learned more about IUGR and possible complications through online forums than through what any of the doctors every really said. Right after delivery the doctor pointed something out about the cord or placenta differences to a nurse, but I didn't quite see what it was. Fortunately all tests and labwork came back normal but no real insight has been given as to what we can expect down the road. We have only been back home about a week so I am just keeping my fingers and toes crossed that she catches up to brother and ends up happy and healthy.
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